I've noticed significant cognitive decline in my 86 year old mother, but have struggled with what to call it. We have not had her tested for dementia, because other than general age related cognitive impairment I didn't see evidence of classic Alzheimer's, which is what the large majority of forums and experts talk about. (also, when it comes to getting tested for geriatric/memory issues, Mother doesn't like to go see "those" doctors because "there's nothing wrong with me.") We scheduled an appointment for her, but she refused to go saying she did't feel well enough that day.
I'm not a doctor and realize that diagnosing via reading internet articles is not scientific proof. However, my nursing school daughter came home from class last week and says "I think mamaw has dementia." I asked why and she said "we studied that her slumping over to one side when she sits is a symptom of Lewy Body Dementia." I began reading up on the symptoms, and was astounded at the similarities with my mothers symptoms. She shuffles when she walks rather than picking her feet up. (called the Lewy Body Shuffle.) She stoops over and is a fall risk. We took her back to her home a few weeks ago to move some furniture. She slept in her bed, which is mecca to her. Woke up the next morning, stood up and said "I don't know where I am." Took her all day to get her bearings. She called me at 12:30 a.m. this week to tell me the roof was leaking in her assisted living facility room and the floor and her bedspread was soaked. I checked it out. No sign of leaking. Carpet was bone dry. But the left pair of each of mother's house shoes were wet, along with her left pants legs. She denies wetting herself, going so far to tell the nurse to leave her room and not come back if she was going to keep telling her she's peeing on herself. My mother tells us that water is dripping on her face while she sleeps; another thing I investigated and found no evidence. Any spot on the carpet where a footprint has made an imprint mark on the carpet is a "wet spot" to her. "See there, that spot is wet!!" I'll feel of it and it will be bone dry. The only spot on the floor that's wet is near where she's been sitting. Apparently, loss of bladder control can be a symptom of Lewy Body Dementia, as can be delusion (she can go back home and live alone) and hallucinations (water dripping on her face when it rains in her room.) Also, unlike Alzheimers, she knows who were are most of the time. She remembers my name, my wife's name, her grandkids names, and remembers pretty much where she is. She does tend to hide things then cook up a good conspiracy about how it went missing. (losing the key to her lock box is the latest stop what your doing and come fix this emergency.) But just when you think it's typical old person not remembering where she put her keys, she'll drop a real doozy. Like telling me a cute thing one of my kids did with my daddy when she was little. As mother related the story for the 1,000th time, I became my daddy in her telling of it...."you were over in the garden watering the plants and Rachel said what that man doing mamaw?" That man was my father, who has been dead 14 years. Yet she told me the story like I was my father. Weird. She loves to go to church services at her facility. Called me tonight and said "something's wrong with my memory. I forgot today is Sunday."
Something is definitely going on and its getting worse. Depression, apathy, agitation, everything is an immediate emergency, Having some days when she's spot on with what's going on. Other days when she stares at nothing with a blank expression slooped over. Always a social butterfly, she's becoming a recluse living in her own delusional world where she's not the problem, everybody else's the problem. "That nurse thinks I have a urinary tract infection. I don't have a urinary tract infection, and I told her never to come back to my room!" The Lewy Body Shuffle with her legs, the blank expression that never changes, imagining things that aren't happening, but thinking they are very real, remembering who we are on one day and that the grandkids are in school or work and remembering how her dog is doing, then one day she doesn't say much, forgets she's in her bedroom, calls me at 12:24 a.m. to report a nonexistent roof leak, or doesn't know it's Sunday. All these symptoms point to something different than alzheimers. It just seems that all the information out there is on alzheimers, with a tip of the hat to dementia. Yet, when in doubt they seem to knee jerk call everything Alzheimers when I don't think that's what my mother is dealing with. Any constructive advice would be appreciated.
It is especially telling that your mom's problems started with hallucinations. That is often the first symptom people notice with LBD, while it usually comes much later in ALZ.
Sounds like the neurologist is looking at various possibilities, which is a good thing. Especially with your mom's health history it is smart not to jump to conclusions.
My husband had Lewy Body Dementia. What you describe sounds like your mother might have it. Definitely bring it up with the doctor. It would be good to prepare a brief statement to get to the doctor before the appointment, listing specific behaviors that concern you. Doing that in front of your mother can be difficult.
Hallucinations can occur in ALZ, but generally they tend to be in later stages. They are often a very early symptom in LBD.
Memory is often not the primary symptom in LBD, though it is impaired. People with LBD typically don't lose the memory of people. My husband knew everyone in his life up to the day he died. He didn't remember names of "new" people in his life, such as a hospice nurse, but he did know who they were and why they were there.
Cognitive ability fluctuates. That is a core criteria for diagnosis. The cognition levels can vary from day to day or even within a day. This leads people who don't understand the disease to think the person might be faking it. No. They really can't do this task this afternoon that they could do this morning. My husband and I played a board game; he was surprisingly good at it on his good days. Some days I could tell within a few minutes that he wasn't up to the game. I'd say, "Ya know, I'm not feeling like playing this right now. Would you mind if we set it aside for now?" He never argued about that. And he would be really good at it again the next time we played.
Loss of depth perception is common in LBD. It, too, can come and go. Thresholds can seem very high. The change between wood flooring in one room and tile in the next can cause confusion. My husband couldn't figure out how to get into bed so that his head hasn't up against the headboard or his feet past the foot board. Thinking the floor is wet seems to be related to depth perception.
"Lewy Bodies" are teeny balls of protein in the brain. They are found in both Dementia with Lewy Bodies, and also Parkinson's Disease. Persons with LBD have Parkinsonisms, such as shuffling gait, the Lewy lean, rigidity, hand tremors, and others. These seem to fluctuate, too. Some days my husband could write out a check for his golf, and some days he could not write legibly at all. Some days his hands shook, but most days they did not.
Confusion about location is common. (I'm not sure if that is common in ALZ, too.) My husband kept thinking our home was a train station, a bus terminal, and most often an hotel. He kept wanting to go home. He was home!
There are some differences in how the LBD brain reacts to various drugs, and for that reason it is good to have a specific diagnosis. Aricept is generally more effective in LBD than in ALZ, even though that drug was developed for ALZ. Haldol should absolutely NOT be given to someone with LBD, but may be tolerated in ALZ.
Best wishes to you as you help your mother with this. Do come back and update us on your progress.